Chronic Disease


It’s easy to appreciate the seasonality of winter blues, but web searches show that other disorders may ebb and flow with the weather as well.

Google searches are becoming an intriguing source of health-related information, exposing everything from the first signs of an infectious disease outbreak to previously undocumented side effects of medications. So researchers led by John Ayers of the University of Southern California decided to comb through queries about mental illnesses to look for potentially helpful patterns related to these conditions. Given well known connections between depression and winter weather, they investigated possible connections between mental illnesses and seasons.

Using all of Google’s search data from 2006 to 2010, they studied searches for terms like “schizophrenia” “attention deficit/hyperactivity disorder (ADHD),” “bulimia” and “bipolar” in both the United States and Australia.  Since winter and summer are reversed in the two countries finding opposing patterns in the two countries’ data would strongly suggest that season, rather than other things that might vary with time of year, was important in some way in the prevalence of the disorders.

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“All mental health queries followed seasonal patterns with winter peaks and summer troughs,” the researchers write in their study, published in the American Journal of Preventive Medicine. They found that mental health queries in general were 14% higher in the winter in the U.S. and 11% higher in the Australian winter.

The seasonal timing of queries regarding each disorder was also similar in the two countries. In both countries, for example, searches about eating disorders (including anorexia and bulimia) and schizophrenia surged during winter months; those in the U.S. were 37% more likely and Australians were 42% more likely to seek information about these disorders during colder weather than during the summer. And compared to summer searches, schizophrenia queries were 37% more common in the American winter and 36% more frequent during the Australian winter. ADHD queries were also highly seasonal, with 31% more winter searches in the U.S. and 28% more in Australia compared to summer months.

Searches for depression and bipolar disorder, which might seem to be among the more common mental illnesses to strike during the cold winter months, didn’t solicit as many queries: there were 19% more winter searches for depression in the U.S. and 22% more in Australia for depression. For bipolar, 16% more American searches for the term occurred in the winter than in the summer, and 18% more searches occurred during the Australian winter. The least seasonal disorder was anxiety, which varied by just 7% in the U.S. and 15% in Australia between summer and winter months.

Understanding how the prevalence of mental illnesses change with the seasons could lead to more effective preventive measures that alert people to symptoms and guide them toward treatments that could help, say experts. Previous research suggests that shorter daylight hours and the social isolation that accompanies harsh weather conditions might explain some of these seasonal differences in mental illnesses, for example, so improving social interactions during the winter months might be one way to alleviate some symptoms. Drops in vitamin D levels, which rise with exposure to sunlight, may also play a role, so supplementation for some people affected by mood disorders could also be effective.

 

The researchers emphasize that searches for disorders are only queries for more information, and don’t necessarily reflect a desire to learn more about a mental illness after a new diagnosis. For example, while the study found that searches for ‘suicide’ were 29% more common in winter in America and 24% more common during the colder season in Australia, other investigations showed that completed suicides tend to peak in spring and early summer. Whether winter queries have any relationship at all to spring or summer suicides isn’t clear yet, but the results suggest a new way of analyzing data that could lead to better understanding of a potential connection.

And that’s the promise of data on web searches, says the scientists. Studies on mental illnesses typically rely on telephone or in-person surveys in which participants are asked about symptoms of mental illness or any history with psychological disorders, and people may not always answer truthfully in these situations. Searches, on the other hand, have the advantage of reflecting people’s desire to learn more about symptoms they may be experiencing or to improve their knowledge about a condition for which they were recently diagnosed. So such queries could become a useful resource for spotting previously undetected patterns in complex psychiatric disorders.  “The current results suggest that monitoring queries can provide insight into national trends on seeking information regarding mental health, such as seasonality…If additional studies can validate the current approach by linking clinical symptoms with patterns of search queries,” the authors conclude, “This method may prove essential in promoting population mental health.”

 

When Mort Zuckerman, the New York City real-estate and media mogul, lavished $200 million on Columbia University in December to endow the Mortimer B. Zuckerman Mind Brain Behavior Institute, he did so with fanfare suitable to the occasion: the press conference was attended by two Nobel laureates, the president of the university, the mayor, and journalists from some of New York’s major media outlets.

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Many of the 12 other individual charitable gifts that topped $100 million in the U.S. last year were showered with similar attention: $150 million from Carl Icahn to the Mount Sinai School of Medicine, $125 million from Phil Knight to the Oregon Health & Science University, and $300 million from Paul Allen to the Allen Institute for Brain Science in Seattle, among them. If you scanned the press releases, or drove past the many university buildings, symphony halls, institutes, and stadiums named for their benefactors, or for that matter read the histories of grand giving by the Rockefellers, Carnegies, Stanfords, and Dukes, you would be forgiven for thinking that the story of charity in this country is a story of epic generosity on the part of the American rich.

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It is not. One of the most surprising, and perhaps confounding, facts of charity in America is that the people who can least afford to give are the ones who donate the greatest percentage of their income. In 2011, the wealthiest Americans—those with earnings in the top 20 percent—contributed on average 1.3 percent of their income to charity. By comparison, Americans at the base of the income pyramid—those in the bottom 20 percent—donated 3.2 percent of their income. The relative generosity of lower-income Americans is accentuated by the fact that, unlike middle-class and wealthy donors, most of them cannot take advantage of the charitable tax deduction, because they do not itemize deductions on their income-tax returns.

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But why? Lower-income Americans are presumably no more intrinsically generous (or “prosocial,” as the sociologists say) than anyone else. However, some experts have speculated that the wealthy may be less generous—that the personal drive to accumulate wealth may be inconsistent with the idea of communal support. Last year, Paul Piff, a psychologist at UC Berkeley, published research that correlated wealth with an increase in unethical behavior: “While having money doesn’t necessarily make anybody anything,” Piff later told New York magazine, “the rich are way more likely to prioritize their own self-interests above the interests of other people.” They are, he continued, “more likely to exhibit characteristics that we would stereotypically associate with, say, assholes.” Colorful statements aside, Piff’s research on the giving habits of different social classes—while not directly refuting the asshole theory—suggests that other, more complex factors are at work. In a series of controlled experiments, lower-income people and people who identified themselves as being on a relatively low social rung were consistently more generous with limited goods than upper-class participants were. Notably, though, when both groups were exposed to a sympathy-eliciting video on child poverty, the compassion of the wealthier group began to rise, and the groups’ willingness to help others became almost identical.

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Last year, not one of the top 50 individual charitable gifts went to a social-service organization or to a charity that principally serves the poor and the dispossessed.

If Piff’s research suggests that exposure to need drives generous behavior, could it be that the isolation of wealthy Americans from those in need is a cause of their relative stinginess? Patrick Rooney, the associate dean at the Indiana University School of Philanthropy, told me that greater exposure to and identification with the challenges of meeting basic needs may create “higher empathy” among lower-income donors. His view is supported by a recent study by The Chronicle of Philanthropy, in which researchers analyzed giving habits across all American ZIP codes. Consistent with previous studies, they found that less affluent ZIP codes gave relatively more. Around Washington, D.C., for instance, middle- and lower-income neighborhoods, such as Suitland and Capitol Heights in Prince George’s County, Maryland, gave proportionally more than the tony neighborhoods of Bethesda, Maryland, and McLean, Virginia. But the researchers also found something else: differences in behavior among wealthy households, depending on the type of neighborhood they lived in. Wealthy people who lived in homogeneously affluent areas—areas where more than 40 percent of households earned at least $200,000 a year—were less generous than comparably wealthy people who lived in more socioeconomically diverse surroundings. It seems that insulation from people in need may dampen the charitable impulse.

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Wealth affects not only how much money is given but to whom it is given. The poor tend to give to religious organizations and social-service charities, while the wealthy prefer to support colleges and universities, arts organizations, and museums. Of the 50 largest individual gifts to public charities in 2012, 34 went to educational institutions, the vast majority of them colleges and universities, like Harvard, Columbia, and Berkeley, that cater to the nation’s and the world’s elite. Museums and arts organizations such as the Metropolitan Museum of Art received nine of these major gifts, with the remaining donations spread among medical facilities and fashionable charities like the Central Park Conservancy. Not a single one of them went to a social-service organization or to a charity that principally serves the poor and the dispossessed. More gifts in this group went to elite prep schools (one, to the Hackley School in Tarrytown, New York) than to any of our nation’s largest social-service organizations, including United Way, the Salvation Army, and Feeding America (which got, among them, zero).

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Underlying our charity system—and our tax code—is the premise that individuals will make better decisions regarding social investments than will our representative government. Other developed countries have a very different arrangement, with significantly higher individual tax rates and stronger social safety nets, and significantly lower charitable-contribution rates. We have always made a virtue of individual philanthropy, and Americans tend to see our large, independent charitable sector as crucial to our country’s public spirit. There is much to admire in our approach to charity, such as the social capital that is built by individual participation and volunteerism. But our charity system is also fundamentally regressive, and works in favor of the institutions of the elite. The pity is, most people still likely believe that, as Michael Bloomberg once said, “there’s a connection between being generous and being successful.” There is a connection, but probably not the one we have supposed.

 

By Ken Stern’s book, With Charity for All: Why Charities Are Failing and a Better Way to Give, was published in February 2013

On wards and in intensive care units, when doctors, nurses, patients and families find themselves at odds with one another, they inevitably turn to the experts of last resort: the bioethicists.


Regularly called upon to weigh in on issues including life support, human research, patient rights and organ transplantation, bioethicists are known for bringing clarity to situations so overwrought with opinions, values and special interests that consensus appears impossible.

Now, as the search for consensus in health care reform grinds toward the end of its first year, a national leader in bioethics has cast his critical eye on the debate. At issue, however, are not the usual moral suspects: pharmaceutical manufacturers, medical device makers and hospitals. This time it is physicians who have lapsed in their ethical responsibilities.

In an editorial in The New England Journal of Medicine, Dr. Howard Brody, professor of family medicine and director of the Institute for the Medical Humanities at the University of Texas Medical Branch in Galveston, writes that the medical profession, unlike other groups, has made little effort to curtail future medical costs. Physicians, Dr. Brody maintains, are not “innocent bystanders” to spiraling health care costs but have been complicit in their failure to take an active role in curtailing them.
Moreover, Dr. Brody points out, certain doctors’ groups have gone so far as to make their support for reform contingent on promises that their own income would remain unaffected. “If physicians seized the moral high ground,” Dr. Brody writes in his editorial, “we just might astonish enough other people to change the entire reform debate for the better.”

I spoke with Dr. Brody recently about the ethical obligations of doctors in the health care overhaul, the role of organized medicine, his “Top Five” plan to regain medicine’s moral ground, and whether it all comes down to money.


Q. You write that doctors have an ethical responsibility to advocate health care reform. Why?
A. Doctors have two responsibilities. First, they have a moral duty as an individual advocate. A doctor has a responsibility to his or her individual patients to make them healthier and to help them live longer.
But doctors have a second moral duty: they have an obligation to the general public to be prudent stewards of scarce resources. Doctors only get about 10 percent of health care costs in their pockets, but they control about 80 percent. That isn’t our money — it’s someone else’s — and the public has entrusted us to spend it as wisely as possible.

Q. Have doctors failed in that second moral duty?
A. Unlike previous health care reform discussions where doctors were put on a pedestal, people are now turning the searchlight, appropriately I think, on the medical profession and asking if we are the problem. But rather than rising to that challenge and exercising moral leadership in health care reform, we are acting like one more special interest group. Instead of saying we care about patients enough to put our own interests on the back burner, it has been as if we were more concerned about maximizing our income.
We make so much more money than so many people in this society. To say that we are entitled to that income rather than we are privileged and should give back to society does not, and should not, win us a lot of friends.
The reason that the public gave us so much regard, trusted us, was because they saw us as willing to make that moral commitment to put the patient first. If we ever retreat from that commitment, we lose so much. I don’t even want to think what that would be like.

Q. But are you referring to individual doctors or to organized medicine? Some doctors would argue that the opinions of organized medicine are not representative of doctors as a whole. Take the American Medical Association, for example; it counts only about 30 percent of licensed doctors as members.
A. Over the years I’ve met doctors from virtually every specialty who firmly place the good of the patient ahead of their own personal income and who have made personal sacrifices in their own income in order to practice the best medicine. But there are certain things that can only be accomplished by professional medical societies, things that doctors as individuals could never do.
I firmly believe that if a professional medical society came out and said, “This is our prescription for health care reform, even if it costs us money,” that would get attention.


Q. So is it all about the money?
A. No. It’s an unfortunate joining of money with other issues and motives. We have an American public that generally believes more is better. And rather than giving up bad habits, exercising and eating right, they would rather believe that the answer to health is in high technology.
When you combine this love affair with high technology with a reimbursement system that pays so much more for technology — and less for thinking and sitting and talking with patients — you end up with an expensive kind of medicine, which, when practiced by doctors, puts more money into their pockets.
In actual fact, there’s such a low chance that technology will help all these patients.

Q. How does your “Top Five” solution work?
A. The basic idea is that each specialty would decide on the top five procedures or diagnostic studies that are done commonly but only really help a small fraction of patients. These are things like arthroscopy for osteoarthritis of the knee or MRI’s and CAT scans, all of which are massively overused, not because they help but because of our enthusiasm regarding high technology.
Once each specialty has gone through the research evidence and decided on its “Top Five,” the respective professional organizations would take a public stand, issuing guidelines and recommendations against overuse of those “Top Five” procedures or studies.
By taking a public stand and making it harder for individual doctors to say, “Oh, I know better,” we could build real momentum for cost containment. And we would ultimately all benefit because we don’t need all that technology. You can still be as healthy without it.


By PAULINE W. CHEN, M.D. (March 3, 2010-NYT)

AFTER five years of investigation, the Justice Department has released its findings regarding the government lawyers who authorized waterboarding and other forms of torture during the interrogation of suspected terrorists at Guantánamo Bay and elsewhere. The report’s conclusion, that the lawyers exercised poor judgment but were not guilty of professional misconduct, is questionable at best. Still, the review reflects a commitment to a transparent investigation of professional behavior.



In contrast, the government doctors and psychologists who participated in and authorized the torture of detainees have escaped discipline, accountability or even internal investigation.

It is hardly news that medical staff at the C.I.A. and the Pentagon played a critical role in developing and carrying out torture procedures. Psychologists and at least one doctor designed or recommended coercive interrogation methods including sleep deprivation, stress positions, isolation and waterboarding. The military’s Behavioral Science Consultation Teams evaluated detainees, consulted their medical records to ascertain vulnerabilities and advised interrogators when to push harder for intelligence information.

Psychologists designed a program for new arrivals at Guantánamo that kept them in isolation to “enhance and exploit” their “disorientation and disorganization.” Medical officials monitored interrogations and ordered medical interventions so they could continue even when the detainee was in obvious distress. In one case, an interrogation log obtained by Time magazine shows, a medical corpsman ordered intravenous fluids to be administered to a dehydrated detainee even as loud music was played to deprive him of sleep.

When the C.I.A.’s inspector general challenged these “enhanced interrogation” methods, the agency’s Office of Medical Services was brought in to determine, in consultation with the Justice Department, whether the techniques inflicted severe mental pain or suffering, the legal definition of torture. Once again, doctors played a critical role, providing professional opinions that no severe pain or suffering was being inflicted.

According to Justice Department memos released last year, the medical service opined that sleep deprivation up to 180 hours didn’t qualify as torture. It determined that confinement in a dark, small space for 18 hours a day was acceptable. It said detainees could be exposed to cold air or hosed down with cold water for up to two-thirds of the time it takes for hypothermia to set in. And it advised that placing a detainee in handcuffs attached by a chain to a ceiling, then forcing him to stand with his feet shackled to a bolt in the floor, “does not result in significant pain for the subject.”

The service did allow that waterboarding could be dangerous, and that the experience of feeling unable to breathe is extremely frightening. But it noted that the C.I.A. had limited its use to 12 applications over two sessions within 24 hours, and to five days in any 30-day period. As a result, the lawyers noted the office’s “professional judgment that the use of the waterboard on a healthy individual subject to these limitations would be ‘medically acceptable.’”
The medical basis for these opinions was nonexistent. The Office of Medical Services cited no studies of individuals who had been subjected to these techniques. Its sources included a wilderness medical manual, the National Institute of Mental Health Web site and guidelines from the World Health Organization.


The only medical source cited by the service was a book by Dr. James Horne, a sleep expert at Loughborough University in Britain; when Dr. Horne learned that his book had been used as a reference, he said the C.I.A. had distorted his findings and misrepresented his research, and that its conclusions on sleep deprivation were nonsense.

Dr. Horne had used healthy volunteers who were subject to no other stresses and could withdraw at any time, while C.I.A. and Pentagon interrogators used a broad array of stresses in combination on the detainees. Sleep deprivation, he said, mixed with pain-inducing positioning, intimidation and a host of other stresses, would probably exhaust the body’s defense mechanisms, cause physical collapse and worsen existing illness. And that doesn’t begin to acknowledge the dire psychological consequences.

The shabbiness of the medical judgments, though, pales in comparison to the ethical breaches by the doctors and psychologists involved. Health professionals have a responsibility extending well beyond nonparticipation in torture; the historic maxim is, after all, “First do no harm.” These health professionals did the polar opposite.


Nevertheless, no agency — not the Pentagon, the C.I.A., state licensing boards or professional medical societies — has initiated any action to investigate, much less discipline, these individuals. They have ignored the gross and appalling violations by medical personnel. This is an unconscionable disservice to the thousands of ethical doctors and psychologists in the country’s service. It is not too late to begin investigations. They should start now.
Leonard S. Rubenstein is a visiting scholar at the Johns Hopkins Bloomberg School of Public Health. Stephen N. Xenakis is a psychiatrist and a retired Army brigadier general.

Text  By LEONARD S. RUBENSTEIN and STEPHEN N. XENAKIS
March 1, 2010
Op-Ed Contributors-New York Times

Swine flu may hospitalize 1.8 million patients in the U.S. this year, filling intensive care units to capacity and causing “severe disruptions” during a fall resurgence, scientific advisers to the White House warned.

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Swine flu, also known as H1N1, may infect as much as half of the population and kill 30,000 to 90,000 people, double the deaths caused by the typical seasonal flu, according to the planning scenario issued yesterday by the President’s Council of Advisers on Science and Technology. Intensive care units in hospitals, some of which use 80 percent of their space in normal operation, may need every bed for flu cases, the report said.

The virus has sickened more than 1 million people in the U.S., and infections may increase this month as pupils return to school, according to the Centers for Disease Control and Prevention in Atlanta. If swine flu patients fill too many beds, hospitals may be forced to put off elective surgeries such as heart bypass or hernia operations, said James Bentley with the American Hospital Association.
“If you have 1.8 million hospital admissions across six months, that’s a whole lot different than if you have it across six weeks,” said Bentley, a senior vice-president of the Washington-based association, which represents 5,000 hospitals.
The scenario projections were “developed from models put together for planning purposes only,” said Tom Skinner, a spokesman for the CDC, at a briefing in Atlanta today. “At the end of the day, we simply don’t know what this upcoming flu season is going to look like. It could be severe, it could be mild, we just don’t know.”

Past Pandemics
The models were based on past pandemics, and the CDC is working on new projections based on the latest data gathered from swine flu patients, Skinner said. Those estimates should be available “soon,” he said, without further specifying.
President Barack Obama was urged by his scientific advisory council to speed vaccine production as the best way to ease the burden on the health care system. Initial doses should be accelerated to mid-September to provide shots for as many as 40 million people, the panel said in a report released yesterday. Members also recommended Obama name a senior member of the White House staff, preferably the homeland security adviser, to take responsibility for decision-making on the pandemic.
“This isn’t the flu that we’re used to,” said Kathleen Sebelius, U.S. health and human services secretary. “The 2009 H1N1 virus will cause a more serious threat this fall. We won’t know until we’re in the middle of the flu season how serious the threat is, but because it’s a new strain, it’s likely to infect more people than usual.”

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Clinical Trials
Data from clinical trials to assess the safety and effectiveness of swine flu vaccines will start to become available in mid-September, health officials reported Aug. 21. Full results from the two-dose trials won’t be available until mid-October.
“We are making every preparation effort assuming a safe and effective vaccine will be available in mid-October,” Sebelius said today at the CDC’s Atlanta offices.

H1N1 has already reached more than 170 countries and territories in the four months since being identified, the Geneva-based World Health Organizationsaid. Swine flu causes similar symptoms as seasonal strains. It has so far resulted in worse than normal flu seasons, with increased hospitalizations and cases of severe illness, the WHO said in an Aug. 12 release.
New Zealand and Australia, in the midst of their normal flu seasons, have reported intensive care units taxed to capacity by swine flu patients. The experience provides clues to what the U.S., Europe and Japan may see when the H1N1 virus returns.


President’s Advisers
The president’s advisory council describes as a “plausible scenario,” that 30 percent to 50 percent of the U.S. population will be infected in the fall and winter. As many as 300,000 patients may be treated in hospital intensive care units, filling 50 percent to 100 percent of the available beds, and 30,000 to 90,000 people may die, the group’s report said.

“This is a planning scenario, not a prediction,” according to the report. “But the scenario illustrates that an H1N1 resurgence could cause serious disruption of social and medical capacities in our country in the coming months.”
Peter Gross, chief medical officer at Hackensack University Medical Center in New Jersey, said if the group’s scenario comes true, “I think every hospital in America is going to be in a crunch. We’ll be hard pressed to deal with those predictions,” he said.

‘Overblown’ Estimates
The estimates seem “overblown,” Gross said, given that swine-flu outbreaks in 1968 and 1957 failed to cause as many deaths, even with medical technology and disease surveillance less advanced than today.
“Influenza, you can make all the predictions you want, but it’s more difficult than predicting the weather,” Gross said yesterday in a telephone interview, after the advisory report was made public. “If influenza was a stock, I wouldn’t touch it.”
The 775-bed hospital is planning for an outbreak, upping its order of flu medications and discussing where to put patients if the worst occurs, Gross said.

The President’s Council of Advisers on Science and Technology is chaired byJohn Holdren, the director of the White House Office of Science and Technology, Eric Lander, the head of the Broad Institute of Massachusetts Institute of Technology and Harvard University in Cambridge, Massachusetts, and Harold Varmus, the chief executive officer of Memorial Sloan-Kettering Cancer Center in New York.
The 21-member group of scientists and engineers, created by Congress in 1976, advises the president on policy involving scientific matters.

New Estimates
Seasonal flu usually kills about 36,000 Americans, Skinner said. Swine flu causes more severe illness needing hospitalization among younger people than seasonal flu, while leaving people 65 and older relatively unscathed, saidMike Shaw of the CDC.
The median age of those with the pandemic virus has been 12 to 17 years, the WHO said on July 24, citing data from Canada, Chile, Japan, U.K. and the U.S.
“We don’t know whether the number of severe illnesses will be much greater, but we do know that it’s a new virus and therefore people are very vulnerable,” said Anne Schuchat, director of the CDC’s Center for Immunization and Respiratory Diseases, in an interview yesterday.


Disease Burden
About 100 million people in the U.S. get the annual flu shot, Schuchat said. Pregnant women, who have “a disturbingly high burden of disease” from swine flu, only get vaccinated for seasonal flu about 15 percent of the time. Pregnant women are a top priority for vaccinations, she said.
Seasonal flu usually kills about 36,000 Americans. Swine flu causes more severe illness needing hospitalization among younger people than seasonal flu, while leaving people 65 and older relatively unscathed, said Mike Shaw, associate director of laboratory science at the CDC’s flu division.
The median age of those with the pandemic virus has been 12 to 17 years, the WHO said on July 24, citing data from Canada, Chile, Japan, U.K. and the U.S.
“People who get infected with this strain happen to be the healthiest members of our society,” said Shaw in a presentation yesterday at the agency.
The H1N1 strain is genetically related to the 1918 Spanish Flu that killed an estimated 50 million people. Variations of the Spanish Flu circulated widely until about 1957, when they were pushed aside by other flu strains. People whose first exposure to a flu virus was one of those Spanish Flu relatives may have greater immunity to the current pandemic, Shaw said.


* Text by Tom Randall and Alex Nussbaum, August 25, 2009

San Francisco writer Cordelia Brown knew she was gambling with death when she stopped taking her epilepsy medications two years ago. But she told her mother she had no choice.

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It was for her art, she said. She wanted her head clearer for poetry.
“Sharpen yourself like a knife and plunge into the sky,” Ms. Brown wrote in her 2008 book of poems, “Asylum.” That perfectly fit her approach to life: from overcoming a childhood automobile accident that nearly killed her to later journeying to India to teach English to Tibetan monks and living in a remote artists colony in the Venezuelan Andes mountains.

On May 1, at age 29, Ms. Brown faced her own apparent premonition of the nearing end with a peace beyond her years.
“Starting over – sinking into the night – my slate is clean,” were the last words she posted on her Facebook page before going to sleep.
And then, sometime that night, she died of an epileptic seizure.

The epilepsy was the only holdover effect of the accident in 1994 near Cloverdale, when a car driven by a 13-year-old girl slammed into the Brown family Ford Explorer, injuring six family members on their way to a Christmas vacation. Cordelia, then 14, was the most seriously injured, and was hospitalized in critical condition with head injuries.

Her gentle spirit, which shone through in her probing brown eyes and easy laugh, will be missed by not just her family, but poets and other artists through Northern California, friends and relatives said.
“My daughter was a stunning, beautiful woman, inside and out,” said her mother, Josie Brown of Petrolia (Humboldt County). “After the accident, she had to learn everything all over again – how to walk, how to swallow, how to do her studies. But she did it all.”

What Ms. Brown came away with from the experience, other than the epilepsy from injuries to her brain, her mother said, was “a quickening sense of living. She felt like she had a lot to do.”
And she did.

Ms. Brown was born in Homer, Ala., where her parents, Josie and John Brown, raised cattle and ran a travel guide business. When she was 6, the family moved to Petrolia, where the Browns still raise cattle and organic vegetables – and where Josie Brown runs the nearby Lost Coast Camp summer program for children.

After graduating from Mattole Triple Junction High School in Petrolia one year early, Ms. Brown first went to Spanish language school in Costa Rica and then worked at an orphanage in Nicaragua. She took to traveling and teaching English all over the world, and between jaunts she came back to San Francisco long enough to earn a bachelor’s degree in linguistics at New College of California in 2004.

In 2005, by then fluent in Spanish, she earned a certificate at UC Berkeley for teaching English as a second language. She went from there to the artists colony in the Andes, and when she returned two years ago she devoted herself to producing her only poetry book.

“When she came back, she had such a strong passion to do a lot of writing that she stopped taking the series of epilepsy medications she was taking,” her mother said. “She thought they were clouding her brain and she wanted to concentrate.
“I think she knew her life wasn’t going to go on and on,” because of her condition, Josie Brown said. “Cordelia wasn’t thinking about that accident any more, it was all behind her. She was doing her art.”

David Ulansey, a friend and professor at the California Institute of Integral Studies in San Francisco, said he wasn’t sure whether the last words Ms. Brown posted on her Facebook site were “premonition or synchronicity, but they have been very healing for us.”
“Cordelia was a real force of nature,” he said. “She and her poetry radiated sensitivity and insight about the details of things that in the end make all the difference.”

Kevin Fagan, Chronicle Staff Writer
Friday, May 15, 2009

Fast treatment manufactured from flu survivors’ antibodies could pave the way to more effectively thwarting pandemics

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A new method for swiftly producing proteins to fight infections could mean the difference between life and death during future pandemics. Researchers report in Nature today that they have perfected a way to manufacture monoclonal antibodies capable of destroying diseases such the avian flu, which have the ability to swap genes with human flu varieties and jump from birds to people.

Their research is a dramatic advance, because it marks the first time that scientists were able to rapidly generate the disease-killing proteins, according to study co-author Patrick Wilson, an immunologist at the Oklahoma Medical Research Foundation (OMRF) in Oklahoma City. He says that researchers could one day spare scores of lives and nip potential epidemics in the bud by whipping up a treatment within a month from natural antibodies that survivors developed against the threatening disease.

Until now, he says, it took as long as three months to produce enough monoclonal antibodies to protect huge populations, because the immune system only pumps out small quantities in response to infections.

Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, called the new work a “significant advance,” noting in a statement that it “opens the way to producing [monoclonal antibodies] that potentially could be used diagnostically or therapeutically” for the flu as well as other infectious diseases such as hepatitis C and the human immunodeficiency virus (HIV), which can lead to full-blown AIDS.

The new technique, pioneered by Wilson and fellow researchers at the Emory University School of Medicine in Atlanta, saves time by using antibodies produced by so-called B cells (white blood cells that produce and then ferry them to infection sites to battle invading germs) in response to vaccines instead of to actual infections.

According to Wilson, monoclonal antibodies from (deliberately infected) animals were routinely used in the first half of the 20th century to try to treat diphtheria (an upper-respiratory illness that killed roughly 15,000 people annually in the early 1920s until a vaccine was formulated against it in 1924) and tetanus (a potentially fatal infection also known as lockjaw, because one of the muscles it destroys is in the jaw). There were, however, compatibility issues: The human immune system in most cases viewed the animal antibodies as alien and rejected them—or lacked the ammunition to destroy them, thereby making patients sicker.

To avoid these problems, researchers have been trying to perfect and speed up procedures for extracting monoclonal antibodies from humans, replicating them in a lab, and then injecting them into victims suffering from the diseases they were formed to fight. The key to collecting these antibodies has been to remove B cells that bear them from survivors of, say, a particular flu strain—or alternatively, someone who has been vaccinated against the flu (because the flu vaccine contains a weakened version of the virus).

Until now, scientist have run into problems trying to recreate large enough quantities quickly enough to spare lives. Wilson says the process traditionally has taken so long that by the time enough new B cells were generated, the flu strain targeted already had mutated into a form no longer vulnerable to the captured crop of antibodies.

In the new method, the researchers isolated B cells from humans who had been vaccinated against—and therefore had built up specific antibodies to—the seasonal flu. But instead of prodding extracted B cells to proliferate, Wilson says, the teams simply plucked the antibody-producing genes from them and inserted those into existing B-cell lines, thereby increasing their protein output.

The type of B cells that the scientists tapped for the coveted proteins are known as antibody-secreting plasma cells (ASCs). ASCs are among the first-line defenders that the immune system sends out when it detects an infection (including weakened vaccine versions). These cells are tasked with scoping out potential danger and signaling the backup germ fighters required to knock out invading armies. ASCs are short-lived, because they serve more as scouts than as combat soldiers.

The teams found that up to 80 percent of the ASCs that they isolated during their peak (seven days after vaccination) contained monoclonal antibodies to the flu strain they had injected.

“The reason this is so exciting is that the same kind of B cell could be present in people [who] have primary infections,” says Wilson, noting that researchers thus far have only showed this works with antibodies created in response to vaccines. The team now plans to test the method on people infected with the flu or another virus.

Antonio Lanzavecchia, director of the Institute for Research in Biomedicine in Bellinzona, Switzerland, stresses that the effectiveness of Wilson’s technique depends on the relatively short time span during which ASCs are active.

Lanzavecchia believes that his own research is more promising: He has harvested antibodies against both severe acute respiratory syndrome (SARS) and avian flu using so-called memory B cells, which are immune cells that store antibodies from all vaccines and previously beaten viruses—and remain in the blood permanently.

“If you have a spontaneous disease, you have only a short window of time where you can get [ASCs],” he says, “so targeting memory B cells [from someone who has beaten the illness] may be an advantage.”

The problem is, Wilson says, that a person has relatively few memory B cells—”on the order of one in thousands”—making the process of extracting antibodies from them a time-consuming task, because they first must be located.

“We are making new antibodies that [are potentially more effective because they] are binding to very specific strains of a virus,” he says. He adds that the new technique might also be employed to pin down the flu strain someone has by testing the effectiveness of extracted antibodies against it.

Wilson says that the new technique could become widely available in a few years if it is proved safe and effective during human clinical trials.

By Nikhil Swaminathan

IS THE KING OF POP AILING?: A journalist says that Michael Jackson, pictured here in 2001, is suffering from a debilitating disease and needs an emergency lung transplant to survive.

michael-jackson-alpha-1-antitryps_1

Michael Jackson, the moonwalking pop star whose health problems have often shared the spotlight with him, is reportedly wracked with severe emphysema and potentially deadly internal bleeding.

According to Ian Halperin, an investigative journalist who is writing an unauthorized biography of the singer, Jackson, 50, has been fighting the genetically inherited disorder alpha-1 antitrypsin deficiency for several years.

Last year he was seen in a wheelchair near his home in Las Vegas. And earlier this month, photographers snapped a shot of him outside a doctor’s office with his face hidden beneath a mask and a fedora.

If Jackson has alpha-1 antitrypsin deficiency, it means he cannot protect his lungs from his body’s own defenses against bacteria. The disease eventually leads to difficulty breathing, and some forms of the illness can affect the liver and skin. Halperin told the British newspaper Sunday Express that Jackson needs a lung transplant to survive but that he may be too physically frail to endure such an operation. The biographer did not describe his sources in the article but said that the singer can barely speak and has lost 95 percent of the vision in his left eye.

Jackson’s public health troubles began soon after the release of his chart-topping album Thriller in the early 1980s when the 5′ 11″ singer reportedly weighed just 105 pounds, and some speculated that he was suffering from anorexia. He was later diagnosed with vitiligo—which results in a loss of skin pigmentation—and the potentially lethal autoimmune disease lupus in which the body’s immune system gets out of whack and attacks healthy tissue. In 2005, when he was tried and cleared in California of child molestation charges, he became dependent on morphine and the painkiller Demerol, according to his attorneys.

The star’s older brother Jermaine told Fox News that the singer is not doing well, but on Monday a Jackson rep issued a statement dismissing the alpha-1 antitrypsin deficiency reports as “total fabrication.”

“Mr. Jackson is in fine health,” the statement said, “and finalizing negotiations with a major entertainment company and television network for both a world tour and a series of specials and appearances.”

To find out more about the condition, we spoke with James Stoller, a pulmonary critical care doctor at the Cleveland Clinic who has studied alpha-1 antitrypsin deficiency for more than 20 years.

An edited transcript of the interview follows.

What is alpha-1 antitrypsin deficiency?

It is a genetic defect in the production of a protective protein called alpha-1 antitrypsin, which is made in the liver and circulates in the bloodstream. This protein primarily protects the lungs against an enzyme known as neutrophil elastase, which our body uses to break down bacterial cell walls, but it also has the collateral damage of breaking down elastin, the support protein of the lung. This results in the development of emphysema. Some individuals with a genetic disposition for the disease go through life and never develop emphysema; others develop early-onset severe emphysema in their 40s and 50s. The disease is exacerbated by smoking and exposure to other noxious inhaled stimuli that lead to inflammation of the lungs.

How common is it, and how is it diagnosed?

It is very much under-recognized. The best estimate in the U.S. is there are probably about 100,000 severely affected Americans. If one looks at carriers of the disease, that probably affects 3 percent of Americans. It’s quite common—one of the most common genetic variants in the U. S.

It can be diagnosed by checking blood at birth, but that has not been the usual practice here. It is usually diagnosed because one presents manifestations of the disease, most commonly emphysema and liver disease, or because one has a family member who is affected.

If confirmed, does Michael Jackson’s case sound serious?

It’s hard to know. I’m not aware of any association with eye disease, at least any direct link. The gastrointestinal bleeding may be unrelated to alpha-1 antitrypsin deficiency, but to the extent that the deficiency is associated with liver and lung disease, one could develop stomach bleeding.

If he needs a lung transplant on the basis of alpha-1 antitrypsin deficiency, it would bespeak of a fairly advanced degree of emphysema. Such transplants are regrettably not very rare. Of all lung transplants listed in the database of the International Society for Heart and Lung Transplantation, 8 to 11 percent are performed on the basis of emphysema for alpha-1 antitrypsin deficiency.

What type of medications would Jackson have been taking to treat it?

The treatment of emphysema related to alpha-1 includes all the usual medications: medicines to open up the airways, broncodilators; preventive strategies like influenza vaccine, pneumonia vaccine; occasionally oxygen when the individual’s oxygen level is specifically low enough to justify using oxygen pulmonary rehab; sometimes inhaled cortical steroids [to reduce inflammation]. There are also some specific therapies for alpha-1 antitrypsin deficiency, including so-called augmentation therapy. This involves the weekly or monthly intravenous infusion of purified human alpha-1 antitrypsin, which causes the levels in the blood to rise above the protective threshold. The best available studies suggest that this medication can slow the rate of decline of lung function.

* By Brendan Borrell  (Dec. 2008)

Millions of Americans with chronic disease like diabetes or high blood pressure are not getting adequate treatment because they are among the nation’s growing ranks of uninsured.

That is the central finding of a new study to be published Tuesday in the medical journal Annals of Internal Medicine.

The study, the first detailed look at the health of the uninsured, estimates that about one of every three working-age adults without insurance in the United States has received a diagnosis of a chronic illness. Many of these people are forgoing doctors’ visits or relying on emergency rooms for their medical care, the study said.

The report, based on an analysis of government health surveys of adults ages 18 to 64 years old, estimated that about 11 million of the 36 million people without insurance in 2004 — the latest year of the study — had received a chronic-condition diagnosis.

“These are people who, with modern therapies, can be kept out of trouble,” said Dr. Andrew P. Wilper, the study’s lead author. Therapies for someone with diabetes and hypertension “are routine and widely available, if you have insurance,” said Dr. Wilper, a medical instructor at the University of Washington in Seattle.

The most recent government estimate of the number of people in this country without health insurance is 47 million, which means that if the proportions found in the study have remained constant, there might be nearly 16 million people in this country with a chronic condition but no insurance to pay for medical care.

Nearly a quarter of the uninsured with a chronic illness who were surveyed said they had not visited a health professional within the last year. About 7 percent said they typically went to a hospital emergency room for care.

“A lot of people are suffering from a lack of health insurance,” said Dr. Steffie Woolhandler, another of the study’s authors, who is a physician and associate professor of medicine at Harvard.

People with high blood pressure, for example, are at risk for catastrophic medical events like a stroke if they are not getting the drugs they need or having a doctor monitor their disease, said Karen Davis, the president of the Commonwealth Fund. The fund, a foundation in New York that specializes in health care research, has done its own research into the lack of adequate medical care among the uninsured.

The study, being published Tuesday, may have underestimated exactly how many people who are uninsured have a chronic illness, because it includes only those who have already received such a diagnosis, the authors said. Individuals who have not had their conditions diagnosed because they are not seeing a doctor or nurse are not included.

The study’s authors say that their findings cast doubt on the common assumption that many of the uninsured tend to be young and healthy, requiring little in the way of medical care. Because so many actually have chronic conditions that may be expensive to treat, the cost of covering the uninsured is often underestimated, said Dr. Woolhandler, who advocates a nationalized system of health care.

In Massachusetts, she said, the state’s effort to overhaul its health insurance system to cover more residents is costing much more than expected and has not led to universal coverage because policy makers assumed that more people would be healthy. “The state experiments have all failed because of cost,” she said.

The study describes harsh consequences for neglecting easily treatable diseases in so many people. “For some of the 11.4 million uninsured Americans with serious chronic conditions, access to care seems to be unobtainable; many may face early disability and death as a result,” the study’s authors said.

* Text By REED ABELSON (NYT; August 5, 2008)